Today’s blog is my response to yesterday’s shocking post about the study of Rheumatoid Arthritis pain thresholds. You will need to read that post on RA pain to understand this one. I’m finding it extremely difficult to comment on this without sounding like the drama queen that they accuse us of being. However, this is no time to mince words or fear reprisal; so here is my response:

1) My RA Onset Story gives a brief description of the night my onset of full-blown RA began. That night, both shoulders began to hurt like I had been shot or stabbed. The pain was excruciating and immobilizing. Where were my years of “maladapting” over RA to account for my construing this pain to be so extreme?

2) I was not born the day I was diagnosed with Rheumatoid Arthritis. What of the 40 years of my life lived before the diagnosis? I can objectively compare RA pain and other kinds of pain. Having lived both with RA pain and without it, I make a better judge of “actual” RA pain than the researchers do. And I say they are misguided.

3) My confession: During that first year, I made statements which could be classified as “catastrophizing.” I said things such as, “I can’t take care of my baby. What will happen to us?” and “I’m worried I will never be able to dress myself again.” My assertion: I spoke the truth, a sign of mental health, not mental illness or maladaptive behavior. My Bible tells me so – and my psychology degree confirms it.

4) Why do they think that because they have a machine to precisely measure pressure applied to the skin (an algometer, for Pete’s sake?), that what they are doing is logically sound? Yes, my arm hurts much more to be touched than does someone who does not have RA. But, how is that necessarily a “lower threshold” of pain and not “more pain”? My arm did not hurt like this before RA.

5) There may be a few people with RA who actually are hysterical too. So what? There are bad cops, rude drivers, corrupt politicians, and uncaring doctors. Such generalizing has no place in science. I did notice the number of victims participants in most of the Rheumatoid Arthritis pain studies is small. Studies often have 12 or 25 people. Larger ones have 40 or 100. They do not want to compare numbers with me on that.

6) Childbirth. Without even Tylenol or wine, I gave birth to all of my five children at home. The first labor was 29 hours long. It was a difficult birth. I will avoid graphic details for the sake of the men in the room. However, the point is that I do have something to compare with RA pain in determining my pain threshold.

More than one midwife marveled at my high pain threshold and ability to labor gracefully. Once, I stunned the midwife. She said I was the only one who’d ever fooled her since she did not realize it was “time” because I was silent and still through the worst of it.

One of my doctors recently confided in me that she scheduled her epidural and caesarean the day she realized she was pregnant. She was stupefied that I endured childbirth five times.

7) Perhaps this seems extraneous, but I’m a teacher. I did see grammar or spelling errors as I read the articles about RA pain thresholds. Am I to think that the rest of their work is flawless? I did not need more reason to doubt their conclusions, but here it is.

8) Although I have not met an RA patient with a low pain threshold, I do know some people have them. Someone I know had a stubbed toe and insisted that others keep a two foot radius at all times. When this person had a minor stomach flu, she/he screamed on the floor for several hours, “Call 911. I need an ambulance.” I know low pain threshold when I see it.

10) Why would RA pain ruin my judgment when other chronic pain did not? I have lived with other diagnoses for many years, including degenerated discs, bone spurs, and a slipped bulging disc. What is special about RA pain that they believe it makes us become “maladaptive”?

Is the truth about Rheumatoid Arthritis pain just too hard?

Pain has always been considered a warning signal. It’s a protective tactic of the body to warn of damage. Why can’t science believe this about RA pain and be satisfied?

Because it is just too hard. RA pain is invisible. My good GP looks at my hands the other day. They don’t look swollen to him that morning. He says, “But you can make a fist okay, right?”

“No.”

My memo to the Rheumatoid Arthritis pain researchers

Don’t we need to get on with the war on RA? Why are we doing studies to ask whether RA pain is less than it is perceived to be? Why doesn’t every resource go toward curing RA or extending our lives? Where are the sixty-six footnotes about decreasing the mortality rate?